NIH Long Covid study

[Anonymous]

How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

[Anonymous]

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

I think what you are describing is quite different from “brain fog”, “fatigue”, “lingering cough” and supposed “shortness of breath”.

[Anonymous]

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

No one is saying your issues are psychosomatic. But the study seems to indicate that for Covid patients who have mild illness, outcomes like yours are rare. So people who are claiming that long Covid is a widespread health crisis are severely overstating claims, and in many cases trying to conflate mild symptoms that resolve on their own (like the PP who briefly lost her sense of taste and smell for a few weeks) with more severe issues that require medical intervention and a separate diagnosis.

Most people who get Covid never experience serious cardiovascular issues. Or even mild cardiovascular issues. What you describe is not on the list of symptoms identified by the study participants either. So maybe for some people, long Covid really is a state of mind, ascribing even mild problems (including mental health issues that are often the result of stress) to Covid.

I'm sorry you are sick. Outcomes like yours are precisely why I've worked hard to avoid getting Covid the last two years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

I think what you are describing is quite different from “brain fog”, “fatigue”, “lingering cough” and supposed “shortness of breath”.

I think it is important to sort out the above symptoms from physical conditions that occur as sequelae to Covid. These can include heart, lung or kidney impairments that are measurable through standard tests. I believe the latter do not belong in the category of long covid.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

I think what you are describing is quite different from “brain fog”, “fatigue”, “lingering cough” and supposed “shortness of breath”.

I think it is important to sort out the above symptoms from physical conditions that occur as sequelae to Covid. These can include heart, lung or kidney impairments that are measurable through standard tests. I believe the latter do not belong in the category of long covid.

The problem is that they are not so apparent on tests.

[Anonymous]

Aren't there a LOT Of neurological conditions (and I guess others) that diagnostic tests won't pick up? My kid has Tourette's and there's no diagnostic test for it. Tourette's is a pretty obvious one, and generally people don't get accused of faking it.

My dad had a severe onset rheumatoid condition, and the first and second round of tests totally missed it ... he was basically disabled within the course of six months, and then a doctor decided to rerun the rheumatoid panel they had run early on. It turned out that the numbers on the second run showed the problem (which was, thankfully, totally curable) -- but he had tested within normal limits the first time around for whatever reason.

Our current tests are somewhat limited. And, even with current tests, if a doctor doesn't know exactly what they are looking for, there can be a needle in a haystack problem.

[Anonymous]

Anonymous wrote:

Anonymous wrote:yup its the new fibromialga

Ugh. My dh has new anxiety/panic after covid. He literally never had any anxiety history until he was sick with covid. I lost my taste and smell for 3 weeks. They came back, but I experience a phantom smell of sewage and burning rubber, intermittently. It has been 2 months since we were sick. I'm not thinking of it as "long covid", but, it's not nothing, ya know?

maybe calm down with the masking and vaccines, probably anxiety from the constant stream of news and paranoia

[Anonymous]

Anonymous wrote:

Anonymous wrote:yup its the new fibromialga

Ugh. My dh has new anxiety/panic after covid. He literally never had any anxiety history until he was sick with covid. I lost my taste and smell for 3 weeks. They came back, but I experience a phantom smell of sewage and burning rubber, intermittently. It has been 2 months since we were sick. I'm not thinking of it as "long covid", but, it's not nothing, ya know?

The onset of his anxiety post Covid may just be a coincidence. There is no proof that the virus caused the anxiety.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

I think what you are describing is quite different from “brain fog”, “fatigue”, “lingering cough” and supposed “shortness of breath”.

I think it is important to sort out the above symptoms from physical conditions that occur as sequelae to Covid. These can include heart, lung or kidney impairments that are measurable through standard tests. I believe the latter do not belong in the category of long covid.

Yes but part of the point of this study is that it found that in this sample of people with mild Covid (non-hospitalized) they did not find evidence of heart, lung or kidney impairments. They only found the self-reported symptoms that are not linked to an identifiable chronic condition -- fatigue, brain fog, shortness of breath, lingering cough, anxiety, headaches, etc.

I think we need to entertain the possibility that for people who had mild Covid, there is perhaps an excessive tendency to ascribe any physical symptom in the subsequent months or years to Covid, but that these things might not actually have anything to do with having Covid. I think it's possible many of these symptoms are caused from the stress of having Covid or simply living through the pandemic, but that is different than saying Covid causes these symptoms. In which case, it's possible that what the media and some doctors refer to as "long Covid" might not actually be related to having Covid. Certainly this study indicates that might be the case.

[Anonymous]

This is an important study and jumping off point for long-haul Covid issues. If you've taken a research methods class, you know that one can only fail to support or support a hypothesis. This study did not test whether anxiety or mental health concerns were the cause of long-haul Covid symptoms, so we can't draw any scientifically supported conclusions about the syndrome being all "in your head." This study did not evlauate the "realness" of post-Covid symptoms, only some possible causal factors.

Some medical professionals believe that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms. As far as I can tell from a keyword search of the article, none of the diagnostic blood or urine markers for MCAS were tested in this study. Nor were study participants subjected to a tilt table test, the diagnostic standard for POTS. As well, the possible causes of dysautonomia, like an imbalance the renin-angiostensin-aldosterone system were not tested in this study. It is a great start, and I it is good that we have this research, but it still leaves more questions than answers when it comes to post-Covid symptoms.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:yup its the new fibromialga

Ugh. My dh has new anxiety/panic after covid. He literally never had any anxiety history until he was sick with covid. I lost my taste and smell for 3 weeks. They came back, but I experience a phantom smell of sewage and burning rubber, intermittently. It has been 2 months since we were sick. I'm not thinking of it as "long covid", but, it's not nothing, ya know?

The onset of his anxiety post Covid may just be a coincidence. There is no proof that the virus caused the anxiety.

Not only is there no evidence Covid causes anxiety, this would be a strange and extremely novel issue to encounter with a respiratory virus. There are many causes of anxiety and certainly some of them are physiological -- many medications, for instance, can cause anxiety and/or paranoia. But I've never heard of a respiratory coronavirus resulting in this kind of outcome. It would be highly unusual and if people are really convinced this is happening, we should be looking closely at data in controlled studies, not just taking the testimony of random people (sorry PP).

I also think we should start considering the idea of secondary symptoms that are not caused by Covid but may be caused by the experience of having Covid. You see this in cancer patients sometimes. Cancer does not cause depression, but it's not uncommon for patients with cancer to develop depression because having cancer sucks. But it just gets treated as depression, not as some mysterious cancer symptom. If many people with mild Covid cases are later being diagnosed with anxiety, we might want to consider if the cause is not the Covid itself, but the anxiety-inducing circumstances of having Covid.

[Anonymous]

Anonymous wrote:This is an important study and jumping off point for long-haul Covid issues. If you've taken a research methods class, you know that one can only fail to support or support a hypothesis. This study did not test whether anxiety or mental health concerns were the cause of long-haul Covid symptoms, so we can't draw any scientifically supported conclusions about the syndrome being all "in your head." This study did not evlauate the "realness" of post-Covid symptoms, only some possible causal factors.

Some medical professionals believe that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms. As far as I can tell from a keyword search of the article, none of the diagnostic blood or urine markers for MCAS were tested in this study. Nor were study participants subjected to a tilt table test, the diagnostic standard for POTS. As well, the possible causes of dysautonomia, like an imbalance the renin-angiostensin-aldosterone system were not tested in this study. It is a great start, and I it is good that we have this research, but it still leaves more questions than answers when it comes to post-Covid symptoms.

Agree, though I would amend your statement to "some medical professionals hypothesize that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms." Not belief. A lot of what gets discussed as fact or belief around long Covid is really just scientific speculation. Similar to speculation early int he pandemic as to why Covid was so mild in young children -- there were medical professionals who hypothesized that hit had to do with frequent recent exposure to other coronaviruses, and other people speculated that certain childhood vaccines could be offering a stronger immune response. Neither of those are medical facts, it's just people thinking critically about something and speculating on possible causes.

I think it will be difficult to design a study into MCAS/POTS as possible causes of long Covid until the medical community can narrow the meaning of "long Covid". One thing making it hard to do research in this area right now is that the current trend is to constantly expand the definition of long Covid, to include literally any symptom that occurs in a person who at some point tested positive for Covid. You can't run studies into that. Most likely future studies will be limited to people with the most severe or debilitating long Covid symptoms, which is probably as it should be. I think with time many people who are currently considered to have long Covid will no longer be treated as such. A lingering cough after a respiratory virus is not uncommon. Mental health issues like anxiety or depression can have many causes and will be very hard to link to Covid itself.

I think in a few years, the idea that "most" people who get Covid have long Covid will be considered silly.

[Anonymous]

Anonymous wrote:This is an important study and jumping off point for long-haul Covid issues. If you've taken a research methods class, you know that one can only fail to support or support a hypothesis. This study did not test whether anxiety or mental health concerns were the cause of long-haul Covid symptoms, so we can't draw any scientifically supported conclusions about the syndrome being all "in your head." This study did not evlauate the "realness" of post-Covid symptoms, only some possible causal factors.

Some medical professionals believe that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms. As far as I can tell from a keyword search of the article, none of the diagnostic blood or urine markers for MCAS were tested in this study. Nor were study participants subjected to a tilt table test, the diagnostic standard for POTS. As well, the possible causes of dysautonomia, like an imbalance the renin-angiostensin-aldosterone system were not tested in this study. It is a great start, and I it is good that we have this research, but it still leaves more questions than answers when it comes to post-Covid symptoms.

The cause of most POTS is idiosyncratic and there is a general view that many of those cases may be a post-viral syndrome. Another condition, gastroparesis, has origins that are often unexplained (though it is common in both diabetics and lupus patients) and a post-viral cause has been postulated.

Both of these conditions are measurable through objective tests. But of course if they are not tested for (when symptoms suggest them as possibility), you won't find them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is an important study and jumping off point for long-haul Covid issues. If you've taken a research methods class, you know that one can only fail to support or support a hypothesis. This study did not test whether anxiety or mental health concerns were the cause of long-haul Covid symptoms, so we can't draw any scientifically supported conclusions about the syndrome being all "in your head." This study did not evlauate the "realness" of post-Covid symptoms, only some possible causal factors.

Some medical professionals believe that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms. As far as I can tell from a keyword search of the article, none of the diagnostic blood or urine markers for MCAS were tested in this study. Nor were study participants subjected to a tilt table test, the diagnostic standard for POTS. As well, the possible causes of dysautonomia, like an imbalance the renin-angiostensin-aldosterone system were not tested in this study. It is a great start, and I it is good that we have this research, but it still leaves more questions than answers when it comes to post-Covid symptoms.

Agree, though I would amend your statement to "some medical professionals hypothesize that mast cell activation syndrome (MCAS) and/or postural orthostatic tachycardia syndrome (POTS), a dysautonomia, may be the cause of long-haul Covid symptoms." Not belief. A lot of what gets discussed as fact or belief around long Covid is really just scientific speculation. Similar to speculation early int he pandemic as to why Covid was so mild in young children -- there were medical professionals who hypothesized that hit had to do with frequent recent exposure to other coronaviruses, and other people speculated that certain childhood vaccines could be offering a stronger immune response. Neither of those are medical facts, it's just people thinking critically about something and speculating on possible causes.

I think it will be difficult to design a study into MCAS/POTS as possible causes of long Covid until the medical community can narrow the meaning of "long Covid". One thing making it hard to do research in this area right now is that the current trend is to constantly expand the definition of long Covid, to include literally any symptom that occurs in a person who at some point tested positive for Covid. You can't run studies into that. Most likely future studies will be limited to people with the most severe or debilitating long Covid symptoms, which is probably as it should be. I think with time many people who are currently considered to have long Covid will no longer be treated as such. A lingering cough after a respiratory virus is not uncommon. Mental health issues like anxiety or depression can have many causes and will be very hard to link to Covid itself.

I think in a few years, the idea that "most" people who get Covid have long Covid will be considered silly.

It would be good to know wouldn’t it? I’ve somehow managed to avoid Covid thus far (it’s so prevalent now it may be any day) and my biggest concern is the long term issues you read about with potential impacts on cardiovascular function, onset of diabetes, brain plaques, etc. If we could rule these kinds of things out - or show they are super rare - in vaxxed and boosted people - society could really return to almost fully normal

[Anonymous]

Anonymous wrote:How do you explain my cardiac issues that are very clearly seen via MRI and echocardiogram? And no, they weren’t there previously. I am in my 30s, incredibly fit, was running 35-40 miles per week before I got sick (this was pre-vaccine; first wave). Literally couldn’t breathe even though my lung capacity is usually off the charts. I needed inhalers for the first time in my life and even those didn’t work super well. Ekg and blood work showed many abnormalities. I was declared disabled for 1.5 years because I had medical evidence of my persistent illness. These are all very objective measures. Nothing psychosomatic about it.

So you had MRIs and echocardiograms before your 30s? I would have to ask why? If these were not visible before COVID and are now, I could see how you would jump to causation and not correlation. However, I assume you actually never had an MRI or echo before, so you have no evidence. My sister developed the problems that you describe in her mid-30s--in 2002! Long before Covid. And many thousands of others develop these issues in their 30s as well. Please, understand, correlation is not causation. Talk a bit about your mindset overall. What are your stress and anxiety levels like generally?